Meet Gene

My Dad struggled with polycystic kidney disease (PKD), but he didn’t complain. I remember the hot and humid summer in Florida as if it were yesterday. His health had deteriorated. He was not doing well and he was limited to two glasses of water each day. I can still picture the half-filled glass of water and the little sips he took to make it last.

He woke up early each day, still exhausted from his daily grind. But he made a cup of Jamaican Blue coffee for himself and a cup for my mom, the highlight – the greatest joy – of his day. He slowly filled his water glass, being careful not to exceed the limit. I wondered if he was thirsty: if he craved gulping it down, if he wished for just one day where he didn’t have to measure water.

His breakfast was limited by rules, not that he minded. “Food has little to no taste any more, everything tastes like metal,” he told me. He would spend his day at the dialysis center, again, and the daily process to get ready was always the same. First the numbing cream on his arm, then the cellophane wrapping, then his bagel packed for lunch. Right before he left, he always grabbed his blanket, because he always felt chilled to the bones in the dialysis center.

The good (and the bad) of the dialysis center was that he was never alone. Twenty or thirty people also stood in line to get weighed and checked in. They were all waiting in line for the same daily thing – the opportunity to stay alive by being plugged in. The machines hummed, churned and slurped as they did the work that their kidneys could not. It was Goundhog Day for all of them, staying alive only to repeat the same daily process of living in limbo.

Some of them were not candidates for a transplant at all. And this was my Dad’s fate. The connection to the machine was the only way he would stay alive. He sat down in his recliner and held out his arm. For another day he would be grateful for the stinging port that allowed him to live … partially.

My father is very much on my mind as I stand next in line to face the same disease that took him away. Polycystic kidney disease, or PKD, results in kidneys with cysts. These cysts fill with water thereby slowly decreasing the kidney’s function. My challenge is finding a living donor before I have to do the same dialysis my father did before he passed away. Dialysis kept his body working but it didn’t keep him alive.

When I was little, Arnold Schwarzenegger and Lou Ferrigno were my idols. I wanted to be strong like them, I dreamed about being the strongest man in the world. And I got closer and closer. I opened gyms, and training centers. But it was tough on my body. Powerlifting, as a sport, can cause injuries because it pushes the body beyond its limit. So when I developed lower back injuries and a hernia, I had to change my goal.

I decided that I wanted to be the biggest in the world. And, again, I got close. I began my journey into national level bodybuilding. I happened to be one of the largest body builders in Florida. I won awards and the nickname “Mean Gene” by one of my clients, an oxymoron as I considered myself to be the nicest guy around – unless I was your personal trainer!

In my early thirties, I had to change my goal, again. My kidneys had begun to grow as well. I needed to focus on my mind more than my body. I used my degree in electrical engineering to design, develop, finance, and install large commercial, industrial solar systems and large solar farms. I earned another nickname, one that gave me more joy than the one before, “Green Gene.” I am proud of my sustainability efforts that have facilitated huge reductions of greenhouse gases from the earth.

I recently found out from a number of top kidney surgeons that they had not seen kidneys quite as large as mine. In fact, they might be the largest in the world (a title that I never hoped to achieve). My best hope for a normal life is with a kidney from a living donor. But I also know that the line is long. And has been for years. There are people, just like me – and my dad – everywhere.

Now, I have a new goal. I am going to use my kidneys to help others with my same fate. My kidneys are so big, they might as well be a billboard, and they definitely need a job: raising awareness of PKD and the need for living kidney donors.